The Gorilla on my Shoulders

The FODMAPs diet book arrive yesterday. I read it cover to cover, taking notes as I went. I’m pinning a lot of hopes on this new approach helping to solve the mystery that is my digestive track.

When the Celiac and RA were first diagnosed, the radical changes in my diet brought about a 20 pound weight loss and 46.876 total inches lost between June 2010 and Sept 2011. Since then, things have slipped dramatically. I’ve managed to keep my weight about the same, within a 2 pound window, but the inches have crept back. I am now 23.88 inches bigger than a year ago. This seems to be distributed evenly across my body – more edema everywhere.

When I first was diagnosed with RA, I was corresponding with a scientist blogger who gave me some advice about food and elimination diets. His comments, as I remember them: find the foods that don’t exacerbate the symptoms and live on those – one could live on egg yolks if one had to – how big is the gorilla on your shoulders?

At that time, I did a 4 day fast, consuming water only, and then added foods back one at a time. I never did figure out foods (besides gluten and MSG) that caused my symptoms. Since they, I have done other traditional elimination diets, adding foods back one at a time, again with no new information gathered, except that zero carbs allows me to lose weight/edema. So, I’m going to try FODMAP and if that doesn’t work I’ll go to zero carbs. There has to be a solution in the food somewhere. The gorilla has gotten bigger – maybe I can make him cute and cuddly once again.

Joints – 1 in balls of feet & NOTHING in hands – no stiffness or aches this morning! Neck a little crinkly, lower back and shoulder a bit stiff this am.

Hand report:

Still healing: less red, less swollen, less leathery, less puffy, some dryness on knuckles, new deep blisters and new little blisters Saturday and Sunday – sigh – but maybe this gives me a time line – “D” all day Wednesday & blisters on Saturday & Sunday

All Healed: not itchy, no new cracks, no peeling skin. Still using the cortisone ointment 1 x a day.

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I hope this works for you as well! I will tell you from the past 2.5 weeks that I have been on the elimination phase – you have to follow it absolutely exactly or symptoms creep back in and then you don’t know what’s what. For example – they give serving sizes that you should follow. I ended up getting so darn hungry that I ate too much of a good thing and then I started to feel miserable. Also, they give balanced meal suggestions (I have the Castos book – the original auther of the diet) and that is for a reason. When I got too busy I quite following the suggestions and had whole days of nothing but gluten free bread, rice cakes, tuna and Almond Milk. I grabbed what was convenient. The first week when I followed it to a T I was absolutely issue free. I am going to give this part another week so that when I start introducing foods back in I know what’s going on. Oh, by the way, there is a facebook page for this diet and that has been EXTREMELY helpful to me. Lots of suggestions, first hand experience, recipes… I think it’s called Low FODMAP for Foodies. It’s a Group and you have to request membership. Sometimes it takes a day or two for her to get back to you, so don’t worry if you don’t hear back right away.
It’s interesting, when I first got sick I lost over thirty pounds. At one point, when I was in the hospital, they were talking about putting in a feeding tube just to keep me nourished. I have since put back over 20 pounds, which seem odd for someone with lots of GI problems. I have found that being on Prednisone and other medications it has increased my appetite as well as caused edema. Combine that with eating foods that are not healthy – but easy on my GI tract – and you get weight gain. It seems a cruel joke to be so uncomfortable everytime you eat, not enjoying any meals, yet gaining weight for it! Oh well, that’s all part of the loveliness of autoimmune diseases, I guess.
Keep us posted as to how things are going and once again, email me with any questions you have….or if you just need some good support!! I think of you often.
Theresa